Probable IVIG in the next few weeks... what to expect?

[monarchcat]

It looks like we are heading for IVIG with Dr. B. I'm nervous but I think it's a good thing. DS isn't terrible right now, but he's not where he should be. Sooo... I'd love to hear from those who have done IVIG w/ Dr. B! It will help us all, I think, if we know what to expect there, and what your and your child's experience was, and any and side effects that you had.

 

We live about 3 1/2 hours away so we'll probably drive down and stay over for 2 nights.

 

PM me if you are not comfortable posting your experiences publicly...

 

Thanks for any input!

[nojo]

It looks like we are heading for IVIG with Dr. B. I'm nervous but I think it's a good thing. DS isn't terrible right now, but he's not where he should be. Sooo... I'd love to hear from those who have done IVIG w/ Dr. B! It will help us all, I think, if we know what to expect there, and what your and your child's experience was, and any and side effects that you had.

 

We live about 3 1/2 hours away so we'll probably drive down and stay over for 2 nights.

 

PM me if you are not comfortable posting your experiences publicly...

 

Thanks for any input!

 

But if you are comfortable, I would like to know also what to expect. We had our first visit also with Dr. B. We are awaiting some further testing, and it looks like we are headed down that path too (especially after the call I received yesterday from the office). I know that we also have low igg levels, and that is why we are also sick often. From what I have read on the boards, the dosage of ivig is lower for immune deficiency, but higher dose for pandas, so how does that work if you have both? Sorry, I'm not trying to hijack your thread, I have so many questions before our next appointment in mid October. We also live a distance away, so knowing what to expect and how to prepare would be helpful. Thanks.

[philamom]

My daughter had 2 IVIG's with Dr. B. We have not been there since the new infusion center's been added, so I can't give any details about it, but we have always been pleased with the level of care she received. Make sure to well hydrate atleast a week prior, even more two days before and during the infusion. They also admininsiter a bag of fluid with the ivig. I usually bring a portable dvd player and games, but I think the new infusion center is equipped with all that stuff. Feel free to pm me with any other questions.

 

Monarchcat- we stay at a nearby Doubletree with a special rate (let me know if you need info). We drive up the night before (3 1/2 hours) and leave the morning after the procedure. They have an indoor pool.

 

NoJo- In most cases Dr. B uses the high dose IVIG for PANDAS patients that are also immune deficient. But you would need to clarify that with him, of course.

 

Good luck!

Edited September 24, 2010 by philamom

[thereishope]

How's your daughter doing?

 

It looks like we are heading for IVIG with Dr. B. I'm nervous but I think it's a good thing. DS isn't terrible right now, but he's not where he should be. Sooo... I'd love to hear from those who have done IVIG w/ Dr. B! It will help us all, I think, if we know what to expect there, and what your and your child's experience was, and any and side effects that you had.

 

We live about 3 1/2 hours away so we'll probably drive down and stay over for 2 nights.

 

PM me if you are not comfortable posting your experiences publicly...

 

Thanks for any input!

[Kristy S]

I'm not sure how Dr. B operates but MAKE SURE you have an Rx for steroids leaving the office. Many children (including mine) had a headache so bad it caused projectile vomiting afterward. The steroid dose (fill it before your ride home) will fix it. Most of IVIG was no big deal, we got home just fine, the treatment in the office was great too. Just the day we got home she had one instance of the proj. vomiting and without the steroids the headache would have been unmanageable. As long as you keep your child hydrated before and after and have the Rx everything should be great!

Edited September 24, 2010 by Kristy S

[lynn2]

When I went there in the new infusion center they had an open room with individual treatment alcoves. Each alcove had a ceiling mounted monitor that could be for TV or for DVDs. You should check with Louise about the logistics of what to bring to be able to play DVDs--I used both a computer and a DVD player that I brought from home. They don't have any food there (they do have coffee!) but there are a few nearby delis etc that you can pick food up from, or you can put your own food in the refrigerator. They gave DS ibruprofen, benadryl and prednisone before the infusion began, and twice more each day and gave me a prescription for pred. for the next two days. They give instructions to hydrate intensely 3 days before, during the infusion, and for several days afterwards. DS had a slight headache and some tiredness two days after the infusion, but no nausea.

 

If you bring DVDs, I recommend something lightweight and easy to follow.

 

I think DS actually really enjoyed the entire experience. I was pleasant to lie in bed, slightly drowsy from the drugs, eat whatever you wanted and watch movies!

[monarchcat]

Thank you so much for all the advice and info! It really helps ease my mind. If you guys think of anything else that would be good to know, please let me know!

 

Vickie, thanks for asking about my daughter. She's on 100mg/day of azith and holding steady (she'll be on that dose for a year at least) . I think we caught it early enough in her. She just got over a bad cold and so far we haven't seen anything much in the way of an exacerbation. *Fingers crossed*

 

Oh, I do have a question... what time did you have to arrive in the morning, and how long is the child "hooked up"?

[lynn2]

You make an appointment with Louise for arrival--we did 10 one morning and 9 the next. How long depends on your child's weight since the flow is metered to a certain rate. For DS at 160 it was about 5 hours/day.

[nojo]

I want to second the thanks, it always helps to know what to expect. One last question I have would be about Zofran for the nausea. Did anyone think that would be necessary? Is the nausea mostly due to a the headache?